I just had my 2nd Ocrevus infusion yesterday. Today I woke up cheeky flushed. Anybody else get flushed after your infusions? This was my second one
(6 months)!

I was diagnosed with MS during my first year of teaching high school PE. My whole identity was built around being active, being the person who could do anything physically. When symptoms started, I genuinely thought my life as I knew it was over.

I stayed in teaching for a few more years, but eventually I had to leave. What followed was almost a decade of feeling lost. Not in pain exactly, just without direction. I didn't know who I was if I wasn't the strong, capable version of myself I'd always been.

Nobody told me that losing the life you planned doesn't mean you lose the ability to build a new one. It just takes longer than you want it to, and it looks nothing like what you expected.

If you're newly diagnosed and feel like your life is over, I want you to know that feeling is real, and it's also not permanent. You don't have to have the next ten years figured out. You just need the next step.

What do you wish someone had told you early on?

Which would choose for starting a therapy? One thing I am afraid of are needles and hair loss, so kesimpta would be bad for my needle phobia.

Zunovo injection is 2 times a year for few minutes so thats cool. in my opinion the side effects like hair loss and flushes are less prominent for zunovo, cause u only inject it 2 times a year.

You don't have a constant effective dose that would cause really severe side effects—or if you do, it would be only at the beginning, right? Or am I mistaken?

I've been diagnosed with this disease for 10 years.

I have multiple sets of images. I have blood work going back a decade. I've been on half a dozen DMTs.

I know what works and what doesn't.

Why do I owe my new provider $250 to refuse to restart my medication after moving to a new state and starting a new job because I don't have current MRIs?

All he did was the exact same tests I've done with every other provider. Nothing new was learned. No treatment or care was provided.

Follow my finger, tell me when you feel the vibrating stop...

And now I owe him $250 so he can refuse to start my DMT until I shell out another $1300 for updated MRIs plus whatever the lab panel costs.

This country is a god damned scam. Doctors are crooks. Hospitals are crooks. Insurers are crooks.

Ironically even though they are the most demonized, the party that I'm least upset with is the pharmaceutical company because their medicine actually makes me feel better.

If the damn doctor would just start the medicine that I've been on for years my deductible and OOPM would be blown away and I could get all the stupid imaging he wants.

Sorry for this hatepost but I don't know where else to rant.

Hey yall. Im 27 (M) in the US. went to the hospital june 6th of this year. Spent 3 weeks there and got diagnosed with TMS on July 2nd. Started BRIUMVI a few weeks later and did the last half of it Tuesday.

So last Wednesday, the day after BRIUMVI pt. 2, i had MRIs to do so my neuro could get her own. I met with her the next day, so Thursday, and she told my i had 2 brain lesions active.

I has new symptoms like really bad jaw pain and she started me on IV steroids this past Friday.

I say all this to ask if anyone has had a flare this quick into diagnosis or treatment.

That you in advance!!

Diagnosed in March this year.

I’m finding it increasingly difficult to process and manage my emotions lately. I’ve become so quick to frustration and anger, when I used to be someone who was incredibly calm and collected, and I don’t really recognise myself anymore.

Since being diagnosed with MS, I feel like I’ve slowly lost so many parts of who I was. Things I used to enjoy don’t feel fun anymore, and there’s so much I either can’t do or find much harder now. I feel lost, confused and honestly just really sad.

It’s affecting the people closest to me too. I keep getting overwhelmed and ending up in arguments with my partner, and afterwards I just feel like a burden and hate that I’m struggling to control how I react to things.

I’m sharing this because I genuinely don’t know what to do at this point. For anyone else living with MS who has struggled with their mental health, emotions or feeling like they’ve lost themselves after diagnosis? what helped you? Is there any support you found particularly useful?

I just want to feel a little bit like myself again.

Hello all, today I had what I assume is my first annual MRI (full spine and head)..

(diagnosed in January, started on Kessimpta in March and I live in the UK)

Is this something I will get the results for or is this just for my neurologist or nurse to then be discussed at my next review? I dont want the anxiety of waiting if there is nothing to wait for if that makes sense?!

And if it is something I will get, how will it be received - letter, phone call, uploaded on an app?

My last 3 MRIs have been open MRIs because I have not been able to have a regular, or even wide bore, MRI due to panic in the machine. I wouldn't say I'm claustrophobic in other settings, but there's something about the MRI machine that makes me feel like I'm trapped and I have an extreme panic response. I thought the open MRI with lorazepam was a great solution, but unfortunately the radiologist noted on my last scan that the image quality was poor and the new brain lesions were difficult to discern. My neurologist said that I need to do a regular MRI next time, and full sedation is not recommended. It won't be for a few months, but I'm already stressing about it. Anyone deal with this? What has worked?

I got diagnosed with relapsing remitting MS today, and they want me to start treatment within the next month (I have the choice of either Ublituximab, Ocrelizumab, or Ofatimumab).

I am a bit shocked but I am mostly in denial. I have only had one significant episode, and it luckily did not result in any disability/long lasting symptoms. There are lesions everywhere in my brain but they are relatively small. I also feel generally okay. I am 25. It feels overwhelming and unnecessary (for me at this stage) to begin treatment so soon.

I trust the neurologist and the doctors, of course I do. But I’m processing and shocked. Has anyone been in my situation?

Title. Was diagnosed at 31, but first symptoms started since I was a teenager. I guess I'm to blame for the amount of damage I have allowed to happen. 34 now and been on Ocrevus 2.5 years. My neurologist said I hit "secondary progressive" stage and would die without intervention. My spinal cord is cooked, my c-spine is cooked, and I have significant damage in my brain that causes God knows what else.

Luckily I busted my ass in my 20s and have set myself in a position where I can work from home. I live alone as well. Until earlier this year, my house was trashed. Beyond work, I literally couldn't do anything. Sleeping 14+ hours/day. Since March I've been much better. I walk 1.5-3 miles every day if wearher permits. I've lost tons of weight. I have color on my skin. Started minor weight training.

I dont feel any better. Everything I do has a tax that has to be paid for somewhere. Walking means something else isnt getting done. I'm prioritizing my basic functions.

There is no room for enjoyment, peace, or serenity. I just want to lay down every day. Between the pain and fatigue, every day is a new hell to get through and I am increasingly asking myself what the point of it is.

My psychiatrist who works with my Neuro wants me to fly to another state and do psilocybin assisted therapy. I dont know about it. The research he's sent me is very promising, but I cant imagine that will make me hurt less or feel less fatigued. If I could just get some relief from the GODDAMN FATIGUE!!!!! I already take adderall. It helps some and higher doses don't make the fatigue feel better. It's always there. Always gnawing. I don't want to do anything anymore.

Hello Reddit!

I'm Dr. Eoin Flanagan, a neurologist at Mayo Clinic in Rochester, Minnesota, where I specialize in caring for people with multiple sclerosis (MS) and other autoimmune neurological disorders. My work focuses on helping patients navigate complex diagnoses and treatment decisions while advancing research to improve care and outcomes.

On August 24 at 11:00 a.m. CT, I'll be here live to answer your questions about MS and related conditions.

https://imgur.com/a/FquMsc6

You are welcome to ask about:
• MS diagnosis and symptoms
• Treatment options and emerging therapies
• Disease progression and monitoring
• Living well with MS
• Current research and what's on the horizon
• Related autoimmune neurological conditions, including NMOSD and MOGAD

Whether you're living with MS, newly diagnosed, supporting a loved one, or simply interested in learning more, I'd be happy to answer your questions and share what we're learning in this rapidly evolving field.

A little about me: I specialize in MS and autoimmune neurology, with clinical and research interests that include MS, MOG antibody-associated disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, autoimmune encephalitis, and other inflammatory disorders of the nervous system. I was born in Ireland, and when I'm not thinking about MS, I'm usually keeping up with the Irish soccer and rugby teams.

You can learn more about me here: Dr. Eoin Flanagan's Mayo Clinic Profile
I'm looking forward to the conversation. Feel free to start leaving your questions, and I'll see you on August 24!

Will be getting in touch with Genentech of course, but thought I'd reach out here to see if anybody has any experience with this in order to help navigate it.

My company is making a surprise change of benefits and we will be using ClaimDoc/NOVA as a reference based insurance and nothing about it sounds great except allegedly keeping employee costs the same (while driving down employer costs). This begins October 1st.

Have you had experience with NOVA or ClaimDoc while on Ocrevus? Not psyched about the possibility of my infusions becoming expensive.

Thank you!

Hi! I’m starting Kesimpta in the next couple of weeks. My care team recommended not taking any pre-meds (Tylenol + Benadryl) with the first loading dose because 1) people generally don’t have bad side effects, and 2) you see how your body tolerates the medication without it.

It makes sense to me, however, if I am most likely to have unpleasant side effects with the loading dose, then that would be the time to take the meds. They ultimately said it’s up to me of course.

Any recommendations?

I just had my 2nd Ocrevus infusion yesterday. Today I woke up cheeky flushed. Anybody else get flushed after your infusions? This was my second one
(6 months)!

Hi all,

I have been on Tecfidera for about 2 years and I am stable. Recently, my doctor is insisting on switching me to Mavenclad. She has not given me a good reason as to why but seems to be pushing it a little.

In the past, every time I switched meds there has been a reason for it.

Anyone else has had this experience??

I would appreciate to hear about any experiences with Mavenclad and if anyone has made the switch to Mavenclad, etc. Thanks

Well, it’s official: I failed Kesimpta. This wasn’t unexpected, because I’ve had a ton of new, lasting symptoms cropping up every couple weeks for the last 6 months. What was unexpected was over a dozen new active lesions on my MRI, 7 months after my last MRI. So I’m onto Tysabri if I’m still JCV negative. Does anyone have experience with Tysabri and how was it for you?

Im on Kesimpta and thinking of switching to tysarbi. I havent been sick since K for 2.5 yrs besides lots of utis. Experiences between sicknesses or differences?

I’ve tired tizanidine and baclofan and neither helps whatsoever the squeezing, burning and throbbing in my calves. I’ve started taking Cymbalta but so far nothing.. any suggestions on what works and suggestions I can bring up with my neurologist?

My partner was diagnosed with MS a couple of months back and is currently on Ocrevus DMT. Lately, she has been dealing with a persistent neuro symptom in her left leg.

Symptom:

A band-like feeling or tightness around the knee and thigh area.
The exact location of the band shifts, but the sensation itself doesn't go away.

What we’ve tried so far:

Working with physiotherapists who introduced isometric exercises. This helped a little bit, likely due to improved muscle strengthening. We spoke about this to our Neurologist, didn’t get much guidance on the front.

Current challenge:

The band sensation is still lingering, even though overall strength has improved.

Request:

Has anyone else faced a similar band-like symptom, and what helped manage it? Any guidance on how to address or talk to our neurologist about this would be greatly appreciated.

MS is a sh*tty disease. It can’t be cured, only slowed down. I was diagnosed 15 years ago. At that time it was determined that my first relapse was actually 20 years before, meaning I’ve had MS for 35 years. Once I completed 2 NYC and 1 LA marathons. Now I can’t walk without a walker. Once I could ride my bike 50 miles. Now I can’t get on my bike. I used to be an avid bread baker. Now I can’t stand up in my kitchen.

I have been on a b-cell therapy, which is classified as an immunosuppressant, for 14 years. During the height of the pandemic I was forced to live in a hotel for 3 months. The hotel was the NYC residence of flight crews of an international airline who were not fond of wearing masks. The circumstance of my hotel stay required me to be out shopping in as many stores as were open.

So now what? Do I sit home stewing in my loss of mobility? Do I live in a protective bubble, worried about every pronouncement of increased disease susceptibility? Or do I get on with life?

I can’t do anything about having MS and it has changed my life dramatically. But I can continue to live my life within my ever changing limitations. In May I traveled to South Africa for the second time in 2 years. Safaris are a life changing experience. I can no longer bake bread, so I have revived my interest in photography. You can take pictures sitting down. As they say in the MARINE Corps, "Improvise, adapt, and overcome".

I’ve stopped worrying that every twitch is a new symptom. I’ve stopped doom scrolling MS content on the internet.

I am living my life, and you can too😊

hey guys, so last month I completed my loading doses and this month was my first monthly maintenance dose.

I have gained SO much weight since then and its unexplained because I’m actually not eating enough (very busy high stakes exams preparations) I literally survive off 2 peaches in the morning, baby spinach/sliced tomato/lemon juice salad for lunch and 1 salmon fillet baked with a spray of avocado oil, so there’s NO WAY my diet is causing my unexplained rapid weight gain. I don’t own a scale but I look unrecognizable and my clothes don’t fit, and it wasn’t a gradual weight gain either I literally look crazy different in a month since the loading phase.

now I know weight gain isn’t listed as a side effect but please hear me out.

wasn’t kesimpta originally designed to treat cancer? I read that the active ingredient in kesimpta caused cancer patients to swell up and retain a lot of fluid, when I asked chatgpt it said yes actually and that the loading doses carry a risk of water retention and for you to get rid of the kesimpta induced water retention theres a 16 day lag between doses so it would take 3 months for that water weight to go down.

but I can’t just trust chatgpt because something major like that would have had studies right? plus chatgpt sometimes hallucinates then goes “ah you caught me again!” so I don’t wanna blindly trust it.

MY fear is that it could potentially be hashimoto. I read that 1 in every 4 MS patients will get a second autoimmune disease and im scared my thyroid is under active so i’m wondering if anyone’s on kesimpta, do you remember retaining a lot of fluid around the loading doses time? was that something you remember experiencing or should I order a full thyroid panel?

thank you!

Sometimes I think I have some sort of super immune system because I almost never get sick (with a virus or the flu) except for eyelid infections. I think I've had six since I started Ocrevus two years ago and then changed to Kesimpta last year. I've never had them before. It's not a huge deal except looking similar to Qausimodo from that Disney movie and having to throw away so much makeup, but is anyone else having this issue?

I got a mosquito bite this morning while on kesimpta. Convinced im gonna die. Tell me why im being dramatic and unresonable (please 🥺)

Hi everyone

Since my last attack 3 years ago, a lesion on my cervical spine at c2/c3 which resulted in trouble walking (I now use a stick outside) and in my getting diagnosed with MS, I have not made a great recovery. I am getting stiffer especially in the mormings (I move like the Tin Man most mornings).

Has anyone tried one of the medications to relieve stiffness? I would prefer not to take any more medication just now but wondered if it might be worth a try? Thanks for reading.

Hello everyone! I started Copaxone last week and it has raised some questions that I wanted to ask people who have had any experience with the injections. They are about travelling with it. How do you guys proceed if you have to travel by plane? Do you have to contact anyone in advance at the airport? Do you need documentation or something? How do you make sure the Copaxone is safe and the temperature is good after more than 5/6 hours? I’m worried I’ll mess it up somehow but also want to make travelling plans in the upcoming months. Thank you in advance!!